RlS relief

[Strathmore2024]

Good morning. I have only just discovered this site and find it uselfu so far. I am a 75 year old woman and have suffered intermittently for decades. However 18 months ago I had knee replacement surgery and from that day have suffered daily fro RLS. My GP prescribed pramipexole and due to what I understand is augmentation I am now on a reduced dose of 36mg a day. I am due for a medication reciew on 4th November. I take magnesium supplement and have just begun taking iron, 14mg. From what i read in time I will no longer take the pramipexole and and i am experimenting with a magnesium cream taken nightly. Interested in forum responses and whether surgery increases the likelihood.

[Joolsg]

Yes. Any operation involving bone surgery triggers increased RLS. Blood loss during surgery can diminish iron. RLS patients need high serum ferritin levels. Your GP should have arranged a full iron panel blood test and reviewed trigger meds ( anti depressants etc) before prescribing meds.And during surgery they give anti nausea meds which also trigger worsening..RLS patients need to ask for Zofran.

Did they give opioid pain killers? Stopping those can also worsen RLS.

I am shocked that UK GPs are still prescribing Pramipexole. Especially to someone of your age. Did he warn you about drug induced worsening and the high risk of Impulse Control Disorder?

What dose are you on now? Pramipexole comes in 0.088mg pills so I assume you take 3 x 0.088 pills?

RLS-UK website sets out a withdrawal schedule under 'Useful resources'. It explains how to get off Pramipexole safely. You can print it out and show it to your GP.

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

Yes surgery can precipitate worse RLS.

First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut.

To come off pramipexole reduce by one half of a .088 mg tablet every 2 weeks or so. Ask for a prescription of these if needed. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount or you may be able to reduce more quickly. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

Ropinirole, Neupro and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not up-to-date on the current treatment recommendations. Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.

The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off pramipexole for several weeks and your symptoms have settled. After you are off pramipexole for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to split the doses with pregabalin)

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. If you take magnesium even in a multivitamin or magnesium-rich foods, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it nor calcium-rich foods within 2 hours for the same reason (not sure about pregabalin). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.

If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak (epsom salts), vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, playing and listening to music, creative hobbies, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.

[SueJohnson]

My mistake. In the early morning still being sleepy I goofed and saw pramipexole as ropinirole so gave you the wrong instructions for coming off it. Substitute one half of a .088 tablet for every place I said 25 mg. I have edited and corrected my answer. You said 36 mg which is obviously a mistake. You probably meant .36 mg.

[Eryl]

If you're in to experimenting, you might like to try experiminting with avoiding refined seed oils (called 'vegetable oil' in the shops) and refined carbs like sugar (including fruit juices) and refined starches e.g. flour, 'modified starch' (as found in processed food). These foods cause a lot of systemic inflammation in the body including the nerves and inflamed nerves are hypersensitive and can send out spurious signals. Add vitamins D3 trocotrieniol vit E and foods like green and chamomile tea and replace fruit with blueberries which are high in antioxidants. It's not an overnight cure (might take up to 9 months for inflammation to recede fully) but I've eliminated my RLS without meds by concentrating on reducing my systemic inflammation.

[Merny5]

An absolute yes it does from me! I have had 4 joint replacements and after each one my RLS sky rocketed! For me I think the cause was inflammation. Immediately after surgery, in the recovery room I could not stop my legs from flying around. Some of the nurses were alarmed and asked if I was ok. You indicated that your surgery was 14 months ago. My RLS went back to baseline after about 8 months. I hope your symptoms go away soon!

[Sappington]

Good morning from sunny Tasmania. I am still taking Pramipexole (Sifrol)together with Gabapentin. My doseage is 1 mg of Sifrol in the lateish afternoon and then 1800 mg of Gagapentin taken in 600 mg doses during the evening and overnight. I occasionally take asn extra 0.5mg of Sifrol if the Gabapentrin is not doing the job for me. I had been on 2 mg of Sifrol and was just about to go to 2.5 mg pernight when the Gabapentin was prescrbed. I find the Gabapentin nowhere near as effevtive as Sifrol. My treating neurologist has also prescribed an Opiod tblet to take at midday. I am a bit worried about the side effects of that so have not started on it. I am due for another Ferritin infusion and am arranging to have that done soon.

In summary I am aware of the augmentation effects of Pramipexole with a maximum daily dose of 3.5 mg perday. I have been on this medication since it was introduced into Australia, many years ago. So I find managing the almost constant RLS with the Pramipexole and Gabapentin is working fairly well for me. I was using magnexium suppluments but was using too many and of course got the side effects of that. I now take the recommended daily dose once a day during the evening.

I get an average of 6.5 hours sleep per night so can't really grumble. Would I do away totally with the Pramipexole? I certaniyl would if I had confidence in the alternatiuves. At this time I do not have that.

[Joolsg in reply to Sappington]

3.5mg Pramipexole? Can you check that dose.Pramipexole comes in 0.125mg pills. The maximum dose is 0.5mg.

Gabapentin taken alongside Pramipexole is a complete waste of time. Pramipexole augmentation will ALWAYS break through.

Gabapentin only works once you're off Pramipexole completely.

Look up Augmentation. If you get RLS in day and it's more severe than when you started, it's probably augmentation.

Pramipexole is no longer prescribed by experts because of the inevitable drug induced worsening and high rates of Impulse Control Disorder.

[SueJohnson in reply to Sappington]

So you are now down to 1 to 1.5 mg That is good. but is still 2 to 3 times the maximum dose. Keep reducing . Ask for .125 mg so you can reduce by that much every 2 weeks as I advised before, As I told you before gabapentin won't help much until you are off pramipexole.

Do take the opioid as that will help you reduce the pramipexole. Which one is it? If it is methadone or buprenorphine - they last 24 hours. Most of the others last only 4 to 6 hours and need to be taken that often or you will have mini withdrawals. If you are prescribed one of the others be sure you are given enough to take them that often

[Sappington]

Good morning and thanks for your heplful advice. It certainly seems to me that the Gabapentin, at the moment, is next to useless. As for the augmentation, I have always had the RLS during the day when seated for too long, for instance, on a long haul aircraft flight or sitting in a low chair where my knees are higher than my hips. As for the RLS it is only on rare occasions that I have the experience anywhere else than in my right leg between my knee and my ankle. It is on the odd occasion that I get it all over the body. ( Eating chocolate in any decent size does it every time - (think I should have learned by now but I love chocolate) I realise how bad it must be for sufferers who have this experience every day. I shall try and do a reduction in the Sifrol again and look at the correct way of doing this. I think that my dependancy on the medication is the inhibiting factor for me. Thanks again